Summary of a presentation at the Living with RA Workshop

Rheumatoid arthritis is a systemic, inflammatory, autoimmune disorder. Inflammation causes redness, warmth, and swelling of the joints. Pain comes from the inflammation of the joints and tendons. Physicians seek to combat the inflammation at each phase of the immunologic process with:

Non-steroidal anti-inflammatory drugs (NSAIDs) to control inflammation and pain in general; and

Disease-modifying anti-rheumatic drugs (DMARDs) to combat the overactive cells and their history and to alter the natural history of RA, possibly even halting the development of joint damage.

It's important that the cause of any pain be identified, if possible. People with RA can have pain from many other causes, just as anyone without RA does, and those causes need to be identified and treated, in hopes of curing or controlling the problem without long-term pain medication.

Nonetheless, people with RA still may have chronic pain, as well as acute severe pain episodes, either due to flares or to post-surgical pain. However, pain is often under-reported by patients and/or trivialized as a symptom by physicians.

This is changing, because the Federal government now has a new standard of pain care. It requires physicians to ask patients what they are feeling and what medications they are using, and to do something about the pain - in the same way they check your vital signs (temperature, pulse, and blood pressure) and do something if the signs are abnormal.

Pain Management Programs

Further, major hospitals have been developing dedicated pain management programs. For example, here at the Hospital for Special Surgery we have an acute pain service, which is part of the Anesthesia Department. It includes nurses and anesthesiologists who see you for the first few days after surgery and then transition you to milder medicine that your physician takes care of or a stronger medicine that would be managed by a chronic pain physician. We also have a pain center that manages a lot of outpatients, many of whom have rheumatoid arthritis, who arrive by referral from their rheumatologist or surgeon.

The decision to refer to a pain management specialist has to do with the patient and the comfort level of the physician caring for the patient, based on the doctor's experience with these medications and perception about how the patient is doing. Pain management specialists tend to see patients whose pain has not improved and whose doctors have tried different approaches and can't figure out why the patient has not improved on the more commonly used medications.

Descriptions of Pain

Because pain is so subjective and varies so much from one person to another, it's important for you to be as specific as possible in describing your pain to your physician. Consider the following issues.

On a scale of 1 to 10, how much pain are you having - if 10 is the worst pain you've ever had?

What is the pattern of your pain - where does it arise and where does it spreads to?

What is the duration of your pain - how long does it last - and how often does it occur?

What does your pain feel like? This is very important because the words you use to describe your pain give your doctor clues on its cause as well as what drugs might help it.

Is it a deep aching, throbbing, gnawing or dragging pain? If so, it's probably what doctors call nocioceptive - nerve endings are being injured by some ongoing disorder, such as arthritis. For example, when a joint is being destroyed, the little nerve endings in the body sense that and send a normal pain message just as if it would if you cut your hand - a normal transmission of pain. Or you may have perioperative pain as you recuperate from joint surgery. These are normal, acute types of pain Nocioceptive pain tends to respond well to routine analgesics, such as NSAIDs and opioids that act in the brain.

On the other hand, is it burning, shooting, or tingling pain? If so, it's probably neuropathic pain - caused by abnormal processes that may persist after an injury or disease; nerves that constantly transmit pain become trained, through cellular changes, to transmit pain messages in the absence of an ongoing disorder. In such chronic pain, the symptoms become "imprinted" on your nervous system, which remembers what pain feels like and continues to send those messages, for example, beyond when your surgeon thinks you should be having pain post-operatively. Neuropathic pain responds to so-called adjuvant drugs that affect the brain's perception in unexplained ways. These include antidepressants and antiseizure drugs.

What has been the psychological impact of the pain on you - the degree of suffering - which can vary from the pain person to person from the same type of pain. This can help the physician determine the meaning of the pain for you and what additional treatments (beyond medication) might be useful, such as physical therapy and exercise programs, relaxation therapy and yoga, acupuncture, psychological support for depression or anxiety disorders, which are common in people who have chronic painful illnesses. All of these approaches should be considered in a comprehensive pain management program.

What medications you are taking and in what doses and for how long - and to what extent do they help the pain?

It can be useful to keep a pain diary for a week before seeing your doctor. Note when pain occurs, where it hurts, what it felt like, what you were doing when it hit, how severe it was on a 1 to 10 scale, and what you did to try to reduce the pain and the result of what you did.

Increasing Use of Opioids for Pain Management

After surgery, for acute pain management, some people receive intravenous morphine medication or anesthetic medications that make parts of the body numb. Historically, potent narcotic drugs, such as morphine and codeine, were reserved for people who were terminally ill. Doctors were loath to prescribe them for chronic pain management because of fears of addiction and side effects. However, that attitude has changed dramatically, especially among pain specialists, as these fears have proved unwarranted. These drugs are now used very widely for people who have so-called benign pain (to distinguish it from those who have malignant tumors). Physicians are increasingly open to prescribing very strong medications when necessary and even maintaining people on those medications after the acute period, such as immediately post-surgery, has passed. Some people can tolerate very high levels of narcotic medications, although you don't want to be on those medications long-term if you can find relief from an alternative, and most people don't need to be on narcotics long-term.

The Range of Pain Medications

Most people can find some medication that they can tolerate and that gives them very good relief. However, your need for pain medication - and the type that gives you relief - may change over time. You need to have a plan for dealing with the different types of pain you have:

the chronic background pain that may be with you frequently or all the time, and

the acute severe pain that may arise - when you don't have time to wait for an appointment with your doctor in two weeks.

Your doctor should work with you to have a "plan b" - with medications to institute - when such acute severe pain arises. Here's the range of medications from which your doctor may choose:

Acetaminophen (Tylenol)

Non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Motrin, Advil), naproxen (Aleve); diclofenac (Voltaren), and others - with low-dose ones available over the counter and higher-dose ones available by prescription;

Adjuvant drugs, including: antidepressants such as amitriptyline (Elavil), paroxetine (Paxil) and venlaxafine (Effexor) and the SSRIs, such as fluoxitine (Prozac); anti-seizure drugs, such as gabapentin (Neurontin), carbamazepine (Tegretol), phenytoin (Dilantin) and cloazepam (Klonopin); and some anti-hypertension drugs, such as clonidine (Catapres) - although these drugs require your doctor to be comfortable with "off-label" prescribing (using an FDA-approved drug for an indication other than that for which it has been approved;